AP and longstanding sclero

[Lynn]

Just curious- Is ther anyone out ther who has  done AP with long standing sclero-say at least 10 to 20 years? If so what has been your experience?  Lynn

[Kim]

Hey Lynn and welcome.

It took me 4 years, but I am in total remission from Scleroderma and Lyme by using abx.  Everyone is different in how how fast or well you will respond, but one thing for sure, it is absolutely worth trying considering the alternative treatments.  Richie and LynneG are SD old-timers around here and I'm sure wouldn't mind answering a PM from you.

You can search previous posts, but I've had increased benefits with the frequent use of an infrared sauna and enzymes (I use Neprinol).  Both will dramatically improve your circulation ~ so important with this blasted disease as I'm sure you know.

Take care…….kim

[Maz]

Hi Lynn,

There is also another forum member, [user=1662]JoanneM[/user], who was on Dr T's original Mino in Early Diffuse Sclero Trials who is in complete remission from her sclero. She may be incommunicado for the next week or two, as she's moving, but I'm sure this very lovely lady would be happy to share her story with you, if you PM her. She has been drug-free for a number of years, though now facing the new challenge of possible RA/Lyme. Here is the original thread when Joanne joined recently and she details a bit of her journey here:

http://rbfbb.org/view_topic.php?id=3101&forum_id=1&jump_to=27947#p27947

Peace, Maz

PS You can also read Richie's road to remission in the RBF Spring 2009 eBulletin, if you scroll to the end of this link to the Remission Corner:

https://www.roadback.org/EmailBlasts/ebulletin_spring09.html

PPS I think the trouble with talking to people who have been in really longstanding remission is that they are now back out and enjoying life and their run-in with scleroderma is a thing of the past. The people who come back to share are true gifts, though!

[lynnie_sydney]

……and Richie's reply to you on your other thread. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Lynn]

Thank you so very much to Kim, Maz and Lynnie,

You are so very kind to share your time and knowledge. I will certainly check out those sites. I just didn't know if anyone had had the disease for as long as I have before starting the ap.  Again I am very greatful to all of you at this site!  Lynn

[Cheryl F]

Lynn:

I believe that one of the stories in the book, Scleroderma, The Proven Therapy is about a man who had scleroderma for along time.  He started AP for his RA symptoms to keep him more comfortable as he had accepted his fate with scleroderma. 

I know this is not the question you asked, but I believe the most important factor in how well AP can work for a patient is the level of progression they have had to date.  I would look more toward patients who have your same level of progression, not necessarily the number of years.  I have seen (on this forum) many people who have had sclero for many years (not as many as 20) and their progression has been less than some with rapid progression who's symptoms started only months before. 

One book that you may want to look at is titled, “A Place To Go” by Maureen Taylor.  She had scleroderma for quite a few years and was told that she was near the end with maybe six months to live when she began AP.  The book details her story, it is not a technical book and does not detail her treatment (the Scammell Books are a better bet for that type of reading), but her story is very inspirational particulary for those whose disease has progressed significantly.

For me, I had a very difficult time waiting for those first signs of improvement for Jess, I hope that you will see some small indications that the protocol is working for you so you will have renewed hope.

Cheryl

[Lynn]

Hey Cheryl,

Thanks for the reply.  I'll look into that book. My SD has been almost at a stand still for 10 years and the 10 years before that it was considered Lupus.  I swear I'm already feeling better just listening to all you guys.  As a christian I have learned “to be content in all things” so I've been fine for a long time. It does my heart good to see so many people being helped and so happy. I just hope it is in God's plan for the ap to work, because I have a very sweet daughter and husband that I don't want to suffer- as I am sure all of you can attest to. I'm excited, having good days, life's great!  Again I am humbled by your kindness and encouragement- May you and your family stay well!  Lynn

[Lynne G.SD]

Hey Lynn;
     Glad to see you here.I was really hoping that you and a few others from the SDF would join up.Since you already know my story,I shan't repeat it and it would take forever as I am dog tired and need a hot shower.Spent all day changing the plastic sheets on the 100 foot greenhouse and then locking them in a rail with  with 12 gage squigly wires.It was near freezing and it had rained yesterday so I was working in mud.Every muscle hurts and there is no skin left on my hands.Hubby was away so when he is not here I really get things done.. hehehe
   Kimmie…. no smart remarks !!!!!!
                       Lynne Christine      FYI, Lynne has an E at the end as I am French.Lynn Is the masculin.

[Kim]

Only one remark………….you are my hero! :roll-laugh:

kim

[Lynn]

Kim and Lynne- You guys really are amazing. Not only are you doing well but helping others-like me!  Lynne- much of your story described me to a T, so I'm going to use much of the dietry restrictions you are on.  Pretty much been doing that anyway- you know how your body lets you know these things.  Funny about the Lynn being the masculine form, I've never been a real “frilly person”.  Thanks again- already love you guys!  Lynn

[mkbeeliever]

Lynn,

EVERY person who chimed in on this thread are ANGELS.  They have the biggest hearts and will be here for you every step of the way.  They are so very smart and know so much.  You are in the right place! 

The thing about scleroderma is that many people don't know if they've had it for a long time.  In my mom's case I don't know how long she's had it.  She's always had issues with arthritis and some unnamed auto immune disease.  I feel like the stress from a complete knee replacement 2 yrs ago and a shoulder replacement 9 months ago brought that scleroderma out.  Bottom line is she's always had something…so I'd say its a 50-50 shot that hers is “longstanding.”

Upon her diagnosis, the progression has been very rapid.  She's got a lot of organ involvement, as you can see she's on dialysis due to scleroderma renal failure, she's going in for a test to see if she has PHT, she's got gastro issues, she's a mess, but I definitely feel that the Mino is slowly but surely putting a “halt” to the progression.  If she had not started taking the antibiotics I shudder to think of what she'd be like now.  Her skin is sooooo much better, the stomach is getting better and she's got more energy.  The kidneys unfortunately are not getting better.  I believe if we would have had an earlier diagnosis, she would still have her kidney function and be seeing more rapid improvement…but unfortunately this was not the case.  Dialysis puts a different spin on things. 

I can not wait to follow your progress!

Blessings,
Michelle

[Lynne G.SD]

Michou;
     I have a cat that is in kidney failure due to old age.Her vet says to use heavy doses f probiotics and the supplement called Cat's Claw to boost her immune system to fight it.She has seen cats totally recover….but old age is an other story so I will let you know if a miracle happens.
    There is a wee lass on the SDF site who has a mom going through the same thing as you and I think she really needs someone like you to chat with.I will get her name and if you go to their site you could send her a message.She seems very lost.
      Going to have breakfast,chat later.
                              OW OW OW this morning,Lynne

[Lynn]

Michelle, That is FANTASTIC about your Mom!  What an ANGEL YOU are to take such care of her.  And yes you are right, the ladies on this site are true angels and patient with all my questions. Give your Mom a hug for me and have a great day!  Lynn

[mkbeeliever]

[user=31]Lynne G./SD[/user] wrote:

Michou;
     I have a cat that is in kidney failure due to old age.Her vet says to use heavy doses f probiotics and the supplement called Cat's Claw to boost her immune system to fight it.She has seen cats totally recover….but old age is an other story so I will let you know if a miracle happens.
    There is a wee lass on the SDF site who has a mom going through the same thing as you and I think she really needs someone like you to chat with.I will get her name and if you go to their site you could send her a message.She seems very lost.
      Going to have breakfast,chat later.
                              OW OW OW this morning,Lynne

Thank you Lynne with an E for the info…xxoo

And yes, please try to get that girl's info. and I will reach out to her.  In the mean time I will go look at that site (even though I don't like to – makes me sad.)

I hope you are feeling better after all the hard work you have been doing. I love orchids.  At one point I had 10 of them and surely and systematically proceeded to kill them all. I have one that I found at my old job that thrived under the ultra violet lighting in the office,  I took it when I left the company and have it here with me in my home office.  It keeps sprouting new leaves, but has NEVER bloomed.  I keep it under a halogen light along with two Christmas Cactus plants I have.  (not that any of you cared to know any of this…ha ha! Sorry for hijacking your thread Lynn with no E!)

Blessings,
Michou AKA Michelle

[Lynne G.SD]

Hey Michou;
       I have her name….Jrendon,her post was on page 2 early this morning and her post title is…Starting methothrexate. I already told her about you.
     I am guessing at your plant,if it does well under lights it is likely a Phaleonopsis.It needs repotting every year with new bark.Use CLEAN scisors to cut off all the dead mushy roots and wash the plant in the sink with dish detergent,rinse well and repot in bark that you soaked for 24 hours.If it is a Phal it needs 5-6 weeks of cool nights and warm days to set new flower spikes.Fertilise every second week.Water first,let it drip and then disolve 1/4 teaspoon of fertiliser in 1 cup of water.Let it soak in then put it back where it was.Best place would be in low sun light  at this time of year.Just google phaleonopsis culture to make sure that is what you have.If in doubt send me a pic at     lynneandsantos@citenet.net  Take a look at my greenhouse at http://www.exoticorchidsplus.ca     and tell me if replacing the sheets wasn't a stinker of a job.I am so sore today that I can hardly move.  hehehe

Do you know the Beatles song… Michelle ma belle?…probably not,as I think you are wayyyy too young.

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